Adrianne, a 29-year-old digital marketing worker in London, has lived with a chronic urinary tract infection (UTI) for nearly five years. It took her two years to get a diagnosis. In that time, she says, she was wrongly told she had colon cancer, Crohn’s disease, or that a partner must have given her a sexually transmitted infection.
Her condition began with a single UTI in 2022. She says it has since affected her ability to work properly, her relationships, and her social life. She now shares her experience in videos on TikTok, where she has about 8,000 followers.
Experts estimate that up to 1.7 million women in the UK could be affected by chronic UTIs. Men and children also have the condition. A chronic UTI has no official medical definition. It is generally described as an infection with persistent symptoms, even after a standard course of antibiotics.
Diagnosis and stigma
Professor Chris Harding, a consultant urologist at Newcastle upon Tyne Hospitals NHS Foundation Trust, says sending a urine sample to a lab is the gold standard for diagnosing a UTI. However, he notes that “false negatives” can occur.
Magda Kujawa, a consultant urologist at Stockport NHS Foundation Trust, says chronic UTIs often overlap with other conditions, including painful bladder syndrome, chronic pelvic pain and endometriosis.
Adrianne says she felt “dismissed” by doctors during her search for a diagnosis. She said she was repeatedly given advice about hygiene and hydration while her symptoms continued. Both experts say health professionals should listen closely to patients to determine whether symptoms point to a recurrent or chronic condition, or to something else.
Adrianne says she has received messages from other young women who feel they are “dirty”, are “not taking care of themselves”, or believe “something is wrong with them”. She says more education is needed, adding that UTIs are not taught about at school.
Another patient’s experience
Laura Von Müllen, 26, has also been diagnosed with a chronic UTI and shares her experience on TikTok. She says her symptoms badly affected her time at university and became harder to manage when she started work. She now works remotely from Kent in social media management.
Alongside urinary symptoms, Laura says she has heart palpitations and panic attacks. She says many people assume a UTI clears within three days. “I’ve still got mine two years later,” she said.
Laura also says there are many misconceptions about the condition. “People have said to me: who have you been sleeping with then? When that’s not the case.”
Warnings about online advice
Adrianne and Laura hope that more women sharing their experiences will help demystify the condition. Professor Harding agrees, saying: “the more we can talk about these conditions, the more people will present to appropriate specialists and get the right treatment.”
Both experts warn that while social media can be a useful resource, it also carries the risk of misinformation and harmful advice. Kujawa said she had seen women on social media sitting in baths of disinfectant because they believed they were dirty and that this caused their infections. “Actually, that just made things ten times worse,” she said.
Adrianne and Laura say their symptoms are improving, but describe their recovery as a “long road”.
